Celine Dion joined Hoda Kotb for an NBC interview aired on Tuesday evening, her first broadcast interview since she was diagnosed with Stiff Person Syndrome (SPS). During the candid conversation, the icon opened up about her health struggles and how she is determined to return to the stage.
A rare neurological condition, the autoimmune disease causes stiffness in the body and debilitating spasms, which has kept Dion from performing over the past several years. When Dion postponed the opening of her Las Vegas residency in 2021, she cited “severe and persistent muscle spasms.” Then the singer pushed her 2022 tour to 2023, and shortly after announced that those European dates would have to be postponed too and revealed she was diagnosed with SPS.
While speaking to Kotb, Dion said she began with with 20-milligram doses of the Valium, which can help with the condition’s painful muscle spasms and seizures. But as her body built a tolerance to the powerful medication, Dion said that she increased the dosage to 90 milligrams.
“I did not know honestly that it could kill me,” she told Kotb. “90 milligrams of Valium can kill you, you can stop breathing. And at one point, the thing is that my body got used to it at 20 and 30 and 40 until it went up. And I needed that, it was relaxing my whole body.”
The Grammy winner weaned herself off the medication during the pandemic, “I stopped everything with the help of doctors because when you taper these drugs you can, you can die as well,” she said. “You cannot just like stop everything.” However, without it, her symptoms worsened.
In a clip of Tuesday’s interview released last week, Dion described singing with SPS felt like “somebody is strangling you.” She said she has experienced spasms in her throat, abdomen, spine, and ribs, describing one experience that was so “severe” it left her with a broken rib.
During another segment of her NBC interview, Dion told Kotb that her decision to publicly share her SPS diagnosis arrived after months of feeling like she was lying to fans by initially keeping silent about her condition. As the symptoms progressed, she said she “could not do this anymore,” adding, “Lying for me, the burden was too much. Lying to the people who got me where I am today, I could not do it anymore.”
Determined, Dion has vowed to return to performing. “I’m going to go back onstage. Even if I have to crawl, even if I have to talk with my hands. I will,” she said during her NBC interview. “I am Celine Dion,” she declared. “Because today my voice will be heard for the first time, not just because I have to, or because I need to. Because I want to, and I miss it.”